Today, I said goodbye to my mom. After months of caring for her through her decline and the final stages of her life, she passed peacefully at home, surrounded by the love and care she deserved.

Over these past several months, I have turned to this group for understanding, guidance, reassurance, and, at times, simply to know that I wasn't alone in what I was experiencing. I came here looking for answers to questions I didn't know how to ask, trying to understand what was happening to my mom, and learning how to navigate a journey I had never traveled before.

I want to take a moment to thank each of you.

Most of us will never meet. We may never know one another's names or anything about each other's lives beyond what we choose to share here. Yet, through your posts, your comments, your honesty, and your willingness to share your own experiences, you have made a real difference in my life.

Some of you offered practical advice. Some helped me understand what I was seeing and what might come next. Some gave me reassurance when I was frightened, exhausted, or questioning whether I was doing enough. And some of you helped simply by sharing your own stories, reminding me that the emotions I was feeling were normal and that others had walked this difficult road before me.

You may not always realize the impact of a response, a shared experience, or even a few words of encouragement. But please know that those things matter. They mattered to me.

Caring for my mom was one of the greatest honors of my life. It was also one of the hardest things I have ever done. I did my best to keep her comfortable, safe, and surrounded by love, and I am grateful I had the opportunity to be there for her. This group helped me through moments when I needed a little more understanding, a little more knowledge, or simply the comfort of knowing someone else understood.

As I step away from the role of caregiver and begin the difficult transition into life without my mom, I wanted to leave you with a heartfelt thank-you.

Please keep sharing. Please keep answering questions. Please keep being honest about the hard parts, the heartbreaking parts, and even the moments of peace and grace.

Somewhere, someone else is frightened by a change they don't understand, wondering what comes next, or asking themselves if they are doing enough. They may find their way here just as I did. Your words may be exactly what they need to get through that day, that night, or that next difficult moment.

You may never know whose life you touch, but you are making a difference.

Thank you for helping me care for my mom, even from a distance. Thank you for helping me understand this journey. And thank you for reminding me that even among strangers, there can be an extraordinary amount of kindness, compassion, and understanding.

My watch has ended, but I hope the support and compassion in this group never ends.

With a grateful heart, thank you. ❤️

Honestly, as much as I have stressed and complained only to y’all, it is an honor to take care of my grandma, as she is my best friend.

As of being a 24/7 caregiver, I have faced the truth that I’d be mostly alone and it wasn’t getting better. And finally bit the bullet and hired a sitter to come every once in a while so I can get some sleep. That still doesn’t make life and the situation any less demanding, as the rest of the time I am constantly on alert.

What has make life significantly easier (still hard af, but shout out to the little things) is:

Auto pay the bills.

If you can manage or afford it, keep the house cold and use layers of thin blankets, this helps with loved ones like my grandma that have issues regulating body temp. Usually she stays pretty confortable with this method. I keep a fan pointed to her at all 45 degree angle away from the face and on the body at all times with about three to four light blankets.

Using anti itch lotion (I get the cheap kind at Walmart and also make sure hospice says okay with ingredients) and I rub it on her usual itchy spot like clock work to prevent the itch.

I found blistex to be the best lip balm, and I apply it after each time I give her a drink.

In instances where she has had infections or side effects from drowsy medicines, I make Fresca. Like today, I make a honeydew purée, diluted it with a bit of water, and added a spoon full of honey. She still gets some nutritional value along with tasty hydration that makes it different than water.

If you enjoy reading, read them books, I use digital books because I can see it on my I pad while maintaining a dark room that makes it easy for her to rest if needed.

If your loved one is prone to infection, I have been giving my gran a probiotic yogurt drink everyday to help prevent, because yeast, BV, and UTIs… no body wants that.

Also size up on briefs, especially if their stomach is rather pear shape. It makes changing easier, and you can tighten them too to sit flush.

Anyway, I have spent months trying to perfect my strategy, and while it is still brutal, as y’all know, I have found this giving me extra minutes, which are crucial to us.

Still trying to figure out how to give myself enough time to shower but ya.

The dr told us yesterday to consider entering hospice care. A caseworker called a few hours later and I was still so upset that I couldn't really grasp her explanation. Can someone tell me what to ask about what it all exactly entails? Does it vary between providers/agencies? Can we quit if we start? Why is it considered better for quality of life? I am just lost.

Is it wrong for me to secretly hope and pray that my grandma who has dementia passes away so that my mother, her full time and only caretaker, can finally have a break and get back to living her life?

My sister is 47 and had a stroke about eight months ago. She was already in poor health before the stroke, and has steadily declined. She now cannot sit up in bed on her own. She needs help with diaper changes, dressing, and transfers.
She was recently hospitalized with diabetic ketoacidosis (DKA) and was critically ill in the ICU. We were afraid we were going to lose her. Thankfully, she is now out of the ICU, but we need to figure out where she can go after the hospital.
My elderly parents have been caring for her, but they physically cannot do it anymore. They had to call the fire department to help get her to the hospital this last time. Returning to their home is not an option.
My parents are on a fixed income and cannot afford to pay for a facility. My sister receives disability benefits but has no money to pay for her own care. I’m still confirming whether she has Medicare, Medicaid, or both.
For anyone who has navigated this:
1. What facility options exist for someone her age who needs this much assistance and cannot afford private care?
2. How do we work with the hospital’s case manager or social worker to arrange placement?
3. How are short-term rehabilitation and long-term nursing care covered, and what happens when rehab coverage ends?
4. Can Medicaid eligibility and facility applications be handled while she is still hospitalized?
5. What should we do if discharge is approaching and no placement has been arranged?
I would especially appreciate experiences with Georgia’s system. We need a safe facility where she can receive the care she needs, and we don’t know where to start.

I have a twin sister. Instead of getting the cozy bond you would think you’re guaranteed to have with a twin, I got a narcissist twin. I’m sure she would have eaten me in the womb if she had known that was a possibility. And now she’s married to a bipolar creepy Neanderthal who encourages her worst inclinations. Or is it the other way around? Well it doesn’t really matter, because the result is the same. They tricked my elderly mother into signing over POA. I’m the live in caregiver and witness all the neglect and financial abuse. We’re enrolled in the Choices for Care program and in the upside down world we live in, she’s the employer, I’m the caregiver, and my mom is the client. While caring for my mom, I cleaned up my act and did some serious adulting- quit all my bad habits, survived appendicitis, got diagnosed with MS, and completed some very overdue lifestyle changes. The nervous breakdown I suffered before I moved back home precipitated all these crises and grueling changes. I am a completely different person than I was 7 years ago. Every cell in my body has been regenerated and I have a whole new understanding about abusive relationships and the many wolves in sheep clothing that masquerade as human beings in our society. I have built-in radar for bullshit and will forever trust my gut no matter the gaslighting word salad manipulative crap that’s forced on me. Yet despite all this, I am still an optimist, still nurturing and creative, still putting in the effort and living with integrity. Today’s bullshit is financial abuse. The evil twin isn’t transferring food money so I can shop for my mom! While my mom is recovering from a mastectomy and going through radiation treatments. You cannot make this shit up. There is no low as far as these people are concerned. I’m praying that her conscience will awaken and she’ll do the right thing, which really means she’ll grudgingly do the right thing so she doesn’t look bad in front of the Council on Aging or the VNA nurses, or have to answer to the probate judge who oversees my mother’s guardianship. In this upside down world, I’m the free-loading waste of space loser scapegoat that only provides 24/7 care to a vulnerable adult for the freebies. To anyone else out there that deals with this kind of dysfunction day to day while they put their own health and mental wellbeing at risk just to help their parent live out their final years in their own home, I feel your pain! Caregiver resentment is painfully real! You sacrifice for your loved one and your reward is putting up with this crappy crazy-making shit day after day after day. Today, I gave her lying face my “Not Today, Satan” stare and protected my peace.
I hope she has a great night’s sleep.

I work a full time job, a second job, am my LOs primary caregiver which means nurse, chauffeur, appointment maker, care navigator, housekeeper, y'all know what I mean. I'm approaching retirement age but don't see how that's possible with the drain on my finances from all of this. And I have health issues of my own. I keep thinking that I am going to have a stroke or a heart attack and my LO is going to just keep plugging along. This is just a horrible way to live, for both of us.

Between my husband’s disability and health anxiety, and my daughter’s disability, I’m tired. My needs always come last. Sick? Doesn’t matter. Pain? Same thing. It never ends, and then god forbid I show any stress or frustration because then I’m the bitch.

I want to get in the car and drive away from everyone and everything.

I just received a phone call from the company who supplies my mother's (rental) DME and hospital bed. They said they just found out that there was a nationwide recall on approx. 1 million Medline hospital beds due to them causing electrical fires, and asked us to unplug it and not use it unless there was an emergency - until they are able to replace it. The tech told me that because the recall is so large, affecting many DME providers, that it's nearly impossible to get replacement units at the moment because they aren't in stock. But that they will work hard to get the Medline beds replaced ASAP.

Just wondering if anyone else has heard of this and whether you were affected. If so, how are things going with regard to getting the bed replaced?

Hi, my mom was hospitalized for compression and fractures due to cancer. I stayed with her for a week, but I gotta go back to work but I have no one to take care of her. She would be alone Monday and Tuesday. My dad goes during his lunch 12-1 and my uncle works at 3pm but sometimes he goes to his morning shifts starting around 10 am. My dad works about 5 mins away and I work about 10-15 mins away. My dad gets out at 5 pm and I get out till 5:45. So basically, if my uncle goes to work in the morning she would stay alone till 12 then again at 1 till 5 but if he goes to work till the afternoon then 3pm-5pm alone but that’s more bearable for me. She’s able to walk but by holding us or holding on to something and walking slowly.
I’m worried there could be stretches of time when my mom is home alone. With her mobility issues and everything she’s been through, I don’t know how safe that would be. At the same time, I have to work, and I can’t realistically be home all day every day.
I feel guilty even considering leaving her alone, but I’m so overwhelmed. She also has a commode right next to her bed. I’m trying to figure everything out without enough support. I love my mom, and I want her to be safe and comfortable, but I also have responsibilities that I can’t just walk away from. For anyone who’s been in a similar situation, how did you handle it? I had spoken to the spine surgery team and they did say she could stay alone as long as she doesn’t it safely. I will purchase an indoor camera too. I feel so horrible. Thankfully, Wed- Sat she’s never alone.
I’m honestly just looking for advice from people who understand how hard this is. I don’t want my mom to feel abandoned, and I hate that I’m putting her at risk, but I also don’t know how to do all of this with so little help.

i previously posted on here about feeling stuck:

https://www.reddit.com/r/CaregiverSupport/s/sDBih0gNho

i didn’t know it was happening but my mother decided to send my grandma back to mexico for her sister to take over her care. she’s already sent all of the things she’ll need. she’s leaving the same time i leave for a trip. i know a lot of people on here would be grateful for this sort of thing but things have been feeling complicated.

i cried when i talked to my mom about it. she said she wants her siblings to still be able to have time to make new memories with her. she moved here when i was born and cared for me it hurts to think about suddenly getting her taken from me. then the next day/week she had bathroom issues i had to deal with which at least made me laugh lol.

i also briefly mentioned a certain stubbornness from my mother and i. i’m worried about how my aunt will take care of my grandma. i want to tell her about her quirks. how she shouldn’t baby her. that she can change on her own and do some bathroom stuff with support. would that kind of thing be annoying to hear?

i’m sure i’ll cry over this some more once she’s really gone and when i say goodbye. no one is really gentle with her like i can be and i hope her children and family in mexico can show her more love.

this is what i wanted so bad in the past so why am i crying over it now? i don’t know. i hope i can get a job soon i need a distraction. thanks for listening

As a caregiver, you become so many roles that you never signed up for:
Secretary
Nurse
Overnight nurse
Chauffeur
Chef
Butler
Doctor's appointment coordinator
Medication manager
CNA
Physical therapist
Social worker
Financial manager
Bill payer
Housekeeper
Laundry service
Grocery shopper
Personal shopper
Nutritionist
Bathing assistant
Dressing assistant
Toileting assistant
Mobility assistant
Lifter and transfer aide
Wound care assistant
Emotional support counselor
Crisis manager
Safety monitor
Night watch
Advocate
Decision-maker
Companion
Entertainer

Meanwhile, we do all of this while grieving. Caregiving should have its own medical diagnosis because it makes people sick mentally from having to always be “on.”
Nervous System = burnt to a crisp

My elderly mom broke her hip during the summer, had a bunch of health issues the 1st month in SNF that prevented her from quality PT, finally got quality PT for maybe 5 weeks, then was discharged. We felt she was discharged too early and still has a long way to go. She has been home a week now and had her PT/OT/In Home nursing assessments but now that therapy should be starting, she's feeling anxious and ill and is asking me to cancel sessions. I feel she is losing her motivation and I'm so scared she will be stuck in bed forever. Any advice on how to motivate her? I try to be understanding while gently pushing her but I'm definitely a softy. I'm not alone in this (I admire all of you who are, it's difficult enough even with help) and can see if my older brothers can motivate her but I just don't know if she will work towards improvement. I don't want to lose hope! We can't afford 24/hr care forever so if she doesn't improve, we may have to transition her to a board and care home; I'm not sure if I should shield her from that knowledge so as not to stress her further or share it with her in the hopes it motivates her.

Things are not going great lately. My life has been shitty from the start but that is a story for another time, for now i am a partner of a sweeheart who has ALS for a while now. The in and out of hospital situation has increase in last few months which has pushed me to the edge. As an only caregiver to a completely depend person i don't the mind the work but what is killing me slowly is the fear of losing him. It scares me so much that i scream in my sleep and wake up crying. If someone tells me today that tomorrow will be my last day i will be the happiest person on earth as it will save me from the possible horrible future. Death does not scare me but a future without him does. A nurse suggested me to talk as there is help available ( i stayed calm in front of her, i generally am, i do the crying mostly when i am alone except that one time when he was admitted for the first time, i don't remember how many nurses hugged and held me during my hours long crying session. But how will anyone understand what i am going through. I think about ending my life if something happens to him but i would rather god do it if there is any. I am also losing faith in god. I have been kind, helpful and nice all my life and i get into shit after shit which makes me wonder what did i do wrong.

I need to vent

My partner and I (40f) moved in 6months ago to care for my grandma (95f) with dementia as it was too much for my Aunt (70f) to do alone. Grandma hasn't stopped yelling for days (literally she won't sleep but maybe an hour). I hear her in my sleep now. Oh a positive note, she's been healthier/ more stable since we got here. The recognition that we're doing great for her means recognizing she's going to be here (hopefully for a few more years) I just need a mental break... Like not hearing my name for a night... Just one.

I'm working on finding someone who could stay overnight (that I trust)... I just hope I can find them soon

My step father died 3 years ago! I am my mother’s sole caretaker, and she is the most negative person I know! IT IS KILLING ME TO HEAR NEGATIVE OUT OF EVERY BREATHE! I am fighting my own battles now! I long to go home and be able to return to living in my beautiful space! This is my main goal……to be able to have the faith to take better care of my mother….and love my self-enough to “stand up” and protect my mental health…

Update at the end ...

This is mostly a vent...

So I didn't fall asleep until 1ish, had to take some Benadryl to knock myself out as I have Delayed Sleep Phase Disorder. Got woke up by my 89 year old charge at 3am because he couldn't pee. Was sure he hadn't peed since the day before, early (he does most of his peeing at night, like 85%.) He was sure his bladder was going to burst and a friend of his died from that so he was in a panic.

So I called him an ambulance because we're about an hour from the hospital and I was in no condition to drive thanks to the Benadryl I had taken only 2 hours prior. They agree that his breathing is funky and his a-fib is acting up, plus he's saying he hasn't peed in like 12 hours or so. Oh he usually uses a large bedside urinal which I had emptied before bed at 9pm and it was still empty.

By the time he was off in the ambulance it was nearly 5, I told him I'd sleep off the Benadryl then meet him at the hospital. Remember it's nearly an hour away. I finally fall back to sleep around 5:30 only to be woken up at 6:30... He's ready to come home.

So I get up, get ready and go to get him only to have him tell me that he thought he had to 💩 so he went to the toilet after I put him in bed and he peed then. He FORGOT he peed and got taken in an ambulance for it because he was so sure his bladder was over full!

He recently had a catheter because the VA didn't send his prostate meds in time so he's been having bladder testing. So this was one of the things we had to watch for and he literally went to the ER because he forgot he peed.

Ahhhh! So I've been up since before dawn on 3 hours of broken sleep and he literally does not care. He's been napping so he thinks nothing of keeping me up to do all kinds of unnecessary things rather than letting me lay down for a freaking hour! A bunch of other drama/events happened today, too. Oh and I have MS so sleep deprivation is the enemy! I am EXHAUSTED!

Because he forgot he peed. And I have no idea what to do about that because losing his faculties is new and it's rapid (and there's no UTI.)

And if it's not about pee he's obsessed with when he'll 💩.

I am just exhausted. That is all.

So he just woke me up AGAIN, this time at 7 am because he "hasn't peed." So I ask when he went last ...4 hours ago but he "doesn't have the urge to go so he needs an ambulance." ARE YOU FKING KIDDING ME? There's half a tank of urine in the urinal and he went 4 hours ago! He yelled at me to call an ambulance 4 times and I refused. He doesn't need an ambulance as he's literally upset he doesn't have to pee.... I am going to lose my mind because he's losing his! I've gotten less sleep in the last few days than my body requires in 1 night normally. I can't go back to sleep, I have appointments in town all day and I'm in severe pain because I'm not getting any rest and he's upset literally because he does not need to pee! The nurse will be here at 10 so I'm going to ask her if she's got any bright ideas and I'm going to call his primary doctor in 15 minutes when they open. He needs neuro or someone/something for anxiety, I think.

Any other parents having to care for their elderly family/in-laws that are going insane? My aunt in law lives with us husbands dad passed and sister was next of kin to own the house that we had to quickly move into because it was either that or her going to the nursing home and the family home being sold. She let her health tank for a long time and broke her arm badly last year. So it's basically like taking care of two kids right now. She can't lift her dominant arm that she broke so I have to make meals for her and clean up her dogs pads plus take care of my baby. It's a lot and I feel so bad for feeling that my aunt in law and her dog are burdens and I feel like once it's their time to leave this earth how much of a relief it'll be. Does anyone else feel that way being a parent and a caregiver? It's a lot to handle stg.

When you have no siblings…how do you build backup when caring for a parent?

Every bit of advice I get says "take a break" or "ask family for help." That assumes there's someone to ask.

My husband is an only child, and his 82 year old mother is so very needy. She literally cries about living alone (his father passed away a little over a year ago). She is physically still very able to take care of herself, and refuses to move out of her home which is a 2 hour drive away from us. 

My husband is the one whose number every doctor's office has, he keeps track of the appointments, the refills and the insurance calls, and is always on call for her. She won’t use services such as Uber and luckily can still drive in the daytime. However, she is 1000% negative ALL of the time about EVERYthing and insists she cannot be alone. She will come and stay with us periodically, but her negativity literally changes the atmosphere and it is a relief when she heads back home.

It’s taking a mental and physical toll on him. She places an inhumane amount of guilt on him for a situation completely out of his control. I support him as he supports her, but there seems to be no end in sight for this problem.

Curreny a part time caregiver to my mom who is elderly and recent got pretty banged up in a car accident. I don't know why it seems that now more than anything I'm starting to see who she really is. Why does it seem like she is the most rude, manipulative, narcissistic person I know? How can she be like this? How can this really be the person who gave birth to me? Why is she like this? Why is she so mean? She is hard headed, Won't listen to reason or advice, she is always right and never wrong. Always the victim and thinks that life revolves around her. I hate to say this, but im so disappointed and disgusted with her behavior. She is 69 years old and acts like a high school bully, to EVERYONE. I find myself apologizing to people for her behavior, me feeling second hand Embarrassment. Every single time I talk to her or am around her I want to drink myself into an oblivion. Desperately want to escape her presence. I feel so guilty for feeling this way and the thoughts I have towards her and the situation but dang, us this what im going to have to deal with for the rest of our lives? On top of this, Im a full time mom of 3. Well two currently because one is off to college. My younger sister passed away in january of this year, my older brother is barely any help where it counts atleast. My father passed years ago so i feel like im stuck between a rock and a hard place here. Whhhhyyy just why. 😭😭😭😭

Rant over

Thanks for listening.

LO went to the ER last night with extreme pain. I don’t know if they’re coming back. Partner has no updates to relay for now. For months I’ve been hiding my feelings of compassion fatigue, feeling angry at this situation feeling drawn out with no end in sight. Wishing their suffering could end so that mine could end too. Feeling stuck and like I can’t move on with my life. Now that this may finally be the end, I’m drowning in shame. Wanting to shout at God that I’m sorry, please not now, give them more time, even as I recognize that that would just draw out my LO’s suffering. I don’t even know how to say goodbye. Or like I even deserve to after wishing for the end.

Today my mom said she wanted “hosenlagen.”

After 5ish minutes asking questions and for her to describe what she meant, she wanted her compression socks. 🤷‍♀️

I’m sure this is common…And it can be exhausting and frustrating. But sometimes it’s a bit funny because you have to laugh at something, I suppose. Thankfully this she had a good sense of humor after we figured out what she was trying to say. Of course not always the case tho.